A LYMM man is raising awareness of a rare brain disease that his grandad Ed died from nearly 10 years ago.

Scott Smith is helping a national charity to relaunch an awareness campaign called Ed’s Lace during Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD) Awareness Week.

The campaign encourages people to wear Ed’s Lace with one of the plastic ends cut off so the lace frays.

The fraying represents the progressive nature of PSP & CBD and aims to help open up conversations about the conditions.

PSP & CBD are neurodegenerative conditions caused by the loss of nerve cells in the brain.

Over time this causes problems with balance, swallowing, speech, vision and mobility.

Currently there is no treatment or cure.

Warrington Guardian:

Scott created the campaign himself back in 2015 after his grandfather Ed passed away from PSP.

The idea came to Scott as he was studying for a masters in science communication and was looking to help PSPA increase awareness as part of his dissertation project.

After pitching the lace idea to PSPA who loved it, the campaign became a real hit with more than 4,000 laces distributed worldwide that year.

And as November 2022 marks the 10th anniversary of Scott’s grandad’s death, he jumped at the chance to support the charity once more by relaunching the campaign this year.

Scott said: “The idea came to me whilst I was studying at university and I was trying to describe to my girlfriend, now wife, what I had learnt about the scientific process that happens in the neurons (brain cells) of those living with PSP & CBD.

“It’s like when a shoelace starts to fray, I said. And that was the moment Ed’s Lace was born.

“It was amazing hearing so many people talk about my grandad, PSP & CBD and become united in raising awareness, all by wearing a lace in his name.

“So, I was absolutely delighted when PSPA approached me again earlier this year to say they would like to relaunch the campaign.

“I know how much awareness the campaign raised last time.

“It excites me to think we could do it all over again or even better, raise even more awareness this time around!”

Ed’s Lace is available to buy for £2 at https://pspassociation.org.uk/fundraising/shop/

Share photos of you and your family wearing Ed’s Lace with pride using the hashtag #EdsLace and tagging @PSPAssociation on Facebook and Twitter, and @team_pspa on Instagram.